Back-to-School Shopping for My Special Needs Child
When I was young, back-to-school shopping motivated me to get excited for the upcoming school year.
My best friend, Dana, and I started shopping for supplies together in sixth grade, when our parents let us cross the busy street to Target by ourselves, and continued through high school. It was our tradition.
This was back when Trapper Keepers, funny pencil erasers, and “Saved by the Bell” folders were not only acceptable, but expected. There were no rules for folder colors, pencil box dimensions, or number of glue sticks. We had free rein in the school supplies aisle.
There is no joy in shopping for school supplies anymore. Nowadays, I can order materials for my neurotypical daughter, Ryan, online. I purchase the prepackaged, ready-to-go kit because I know it contains the supply brands the teacher prefers. There is a reason she created that particular list — stick to it!
I will, however, go to the store and buy additional supplies from the teacher’s list because I know the classroom supply will inevitably run low on No. 2 pencils with erasers, dry-erase markers, glue sticks, tissues, disinfectant wipes, and hand sanitizer.
Buying school supplies for my special needs daughter, Cammy, is a whole other ball game. Not only are there no kits available for purchase, but the supply list is usually not sent until two weeks before school begins. It usually contains items that she cannot or will not use, such as colored pencils, but I stick to the list anyway for the good of the class. There is a higher quantity of disinfectant wipes, sanitizer, and tissues on Cammy’s list than on Ryan’s.
Personal items are included with Cammy’s supplies. I need to bring another able-bodied person and a hand truck to deliver these.
Ryan, back, Cammy, right, and her friend Payton Johansen bring all of Cammy’s supplies to school. (Photo by Jacqueline Babiarz)
A box of diapers, several packs of wipes, a case of PediaSure, a couple cartons of coconut water, a gallon of water, small and large syringes, an extender, an extra feeding tube button, and two extra changes of clothes are sorted between the classroom and the nurse.
I give the nurse a folder with paperwork containing Cammy’s “About Me” book with all things pertaining to Rett syndrome; a copy of her COVID-19 vaccination card; scripts signed by her doctor allowing her to receive therapies at school; and my signature on the protocols and medical procedures should something happen in school or on the bus.
I review feed times and double-check that all paperwork is signed and turned in. Several other parents are dropping off medications and seizure plans during their check-in with the nurse.
Payton pushes the hand truck full of supplies into the school. (Photo by Jacqueline Babiarz)
In my paradoxical world, I wish Ryan could experience the same joys I did of picking out school supplies. On the other hand, I wish I could click a button and have all of Cammy’s supplies appear in a virtual cart, and then be neatly packaged for pickup.
Back-to-school shopping enabled me to feel happy and confident as I placed my Michael Jordan notebook inside my desk on the first day of school. Whether they’re standing in line with a great friend, reading their mom’s lunch note, or wearing a new pair of shoes in physical education, I hope all kids enter their first day of school this year feeling happy and confident.
From left, Jackie and her friends Bridget, Chris, and Brian stand in line on their first day of kindergarten in September 1985. (Photo by Joseph Corrado)
Read more about Cammy’s story at our blog, “Cammy Can Reverse Rett.”
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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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Comments
Dori Upham
What a beautiful depiction of a person's day who has Rett Syndrome. And what wonderful descriptions of how to relate to a non verbal person.. Communication is only a small percent verbal. As a RN who cares for DD individuals, I can attest to these girls being both bright and communicative. Also my client has an arid sense of humor that she uses quite a bit.
Rett syndrome is. by that I mean that it exists and the individuals who have acquired it are extraordinary people. My munchkin has an old soul that is easily tamed by a bowl of whip cream.
I am fortunate to have the gig of being her nurse. Thanks Munchkin.